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Lists!

On Wednesday, we meet with a neurologist from their new children’s hospital, and hopefully tackle the following:

If the Sabril continue to be ineffective, what are our next steps?

We need to schedule a swallow/barium study. There are no obvious signs of aspiration, but their frequent viral issues/congestion can also be a sign of silent aspiration. We want to make sure we aren’t being too dismissive. Especially as we start to try to introduce more challenging foods.

I want to inquire about Vagus Nerve Stimulation. I saw those words for the first time last night, and then today my sister-in-law sent me a text asking if I’ve heard of VNS. Seems like something I need to understand better.

We need to schedule a specialized eye exam, (beyond the physical exams they’ve been having).

We need to assemble the “new” team and figure out who else will be involved in their care and at what frequency.

On Thursday we see their pediatrician. Getting established with a local doc will be helpful for a number of reasons.

I need a local pediatric therapist recommendation.

I need help with local options for Palliative care.

I need someone I can call for referrals for programs like Help Me Grow/Birth to 3.

I want them to know who our boys are and what we are dealing with so when our first urgent phone call comes in…we aren’t starting from scratch.

In the meantime, I’m very excited about a new development. Thanks to a developmental disability waiver, the boys are in a program that tries to assist with equipment. I don’t know exactly how this will play out, but we are trying to obtain:

Special Tomato Seating (one for each boy)

A bath chair

Therapy devices (wedges and rolls)

A vestibular swing

So…if all goes according to plan (because that’s how life works) we’ll be established with our new local and specialist medical team, and well on our way to creating a more accommodating environment for the boys by this time next week. Sounds easy enough?